Decision-Making & Ethics of Substitution for People Living With Dementia Going It Alone

What is this Study about?

This study, "Stranger than Family: Decision-Making & Ethics of Substitution for People Living With

Dementia Going It Alone", explores how people facing dementia alone are connected with a substitute

decision-maker and how ideas about capacity, consent, and decision-making affect them.

Interviews will be conducted with:

- People who are facing dementia alone

- Healthcare and social service workers

- Substitute decision-makers for others who are not close family members or close friends

The overall goal of this study is to identify opportunities for advocacy, policy, and practice change to

better support people facing dementia alone.

What Will Happen in This Study?

As a participant you will be asked to:

(1) Take part in one initial interview

(2) Take part in one to two follow-up interviews

All interviews will be conducted by Dr. Celeste Pang. Each interview will be between 20-60 minutes long, or the amount of time that works best for you.

The interviews can be conducted over the phone, over Zoom, or in-person, depending what is most

convenient and accessible to you.

Who is Eligible to Participate in this Study?

You are eligible to participate if you:

- Live in Ontario or Alberta AND

- Have a diagnosis of dementia or are at-risk and planning for a future living with dementia and are

facing dementia alone OR

- Are a healthcare or social service worker, or other professional who has experience trying to connect

adult clients with a substitute decision-maker OR

- Have experience as a substitute decision-maker for someone living with dementia who is not a close

family member or friend

In addition, to be eligible you must:

- Be able to participate in an interview over the phone, on Zoom, or in-person AND

- Understand the purpose of the study and what participation involves

-Speak English

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